What’s the damage?

Brain injury is more common than many would imagine, yet as a
condition it remains largely hidden because many sufferers do not
acknowledge their own condition and statutory services fail to
recognise it. Yet a brain injury can occur in seconds, and have
consequences that will last for the rest of someone’s life.

Acquired brain injury (ABI) includes both traumatic brain injury,
such as in accidents and assaults, and non-traumatic injuries
caused by drug overdoses, brain haemorrhages, tumours and so on.
Unfortunately, although medical advances allow many people to
survive a brain injury, services have not evolved to work together
to enable them to make the most of their rehabilitation
potential.

So what numbers of people are we talking about? Statistics indicate
there are more than 180,000 moderate to severe traumatic brain
injuries annually in Britain,¹ with head injury being
the most common cause of death and disability among children and
young people. Local statistics compiled during one year in
Brighton, Hove and East Sussex for moderate to severe ABI adults
(all causes), indicate at least 193 cases, with head injury being
outnumbered two to one by non-traumatic brain injuries.²
Extrapolating these statistics nationally gives a total figure of
at least 500,000 new ABI cases among adults each year, so brain
injury is indeed more common than we think.

Many of the new victims of ABI each year require a range of service
inputs, across disciplines and professions, from acute hospital
admissions to community reintegration and beyond. This will
typically span many years, and brain injured people are therefore
disproportionately resource-intensive in relation to their numbers.
But there is good evidence to suggest that targeted early
intervention leads to a massive improvement in subsequent quality
of life and an equally massive saving in overall social cost. This
is a client group suited to the development of new ways of
integrated, inter-disciplinary working between health and social
services. Such an approach would produce far higher quality
outcomes for service users as well as substantial financial
benefits.

Given this, it is unfortunate that “patchy” would be a generous
description of current services. Despite several major reports
recommending integrated services for people with brain injuries
(including a 1995 Social Services Inspectorate report³
and the 2001 House of Commons Health Select Committee
Report¹), in most parts of the country neither the NHS
nor social services offer any special arrangements.

Indeed, as the SSI pointed out, in most areas ABI is not recognised
as a separate entity at all, and people with brain injuries are
talked into either physical disabilities or mental health
caseloads. In general terms, they receive a good service in neither
– their needs are substantially different from those of either
client group.

My own move into brain injury work came about when, as a social
worker in an outer London physical disabilities team, I realised
the most difficult third of my caseload comprised people with
different forms of brain injury. The difficulties resulted from the
fact that none of the statutory agencies was prepared to provide
services for them. I discovered that no one in health or social
services knew much about brain injury, nor wanted to know.

My experience in the mid-1990s is still typical for many social
workers now. Some areas have, however, begun to address the
problem. The Northumberland Head Injury Service has been running 10
years, and Nottingham, Aylesbury, Lincolnshire, Suffolk, and the
Medway area of Kent are all developing broadly similar services.
Some include social workers, others do not; some are clinically
led, others are not.

Generally, the non-medical model is found to be more effective in a
community setting. The case management principle is often used, and
this seems to provide the best continuity and seamlessness for
clients and their families. What is also remarkable is how cheap
these services are to run – a budget of £300,000 a year is
typical – and this is often achieved by the creative use of
existing posts.

However, it seems the current fragmented service response, where
individual social services departments and primary care trusts have
been left to make up their own minds on ABI, is not destined to
remain this way.

Work has begun on a new National Service Framework (NSF) for
long-term conditions which will have as its main focus ABI and
neurological conditions. It is likely that this NSF will make its
recommendations by 2004-5.

I would anticipate that subsequent NSF good practice guidelines
will look to a general levelling up of service response across the
country and will ensure an integrated approach (involving health,
social services and the voluntary and private sectors) and the
continuing involvement of service users and their families.

The current NSF working groups have significant involvement from,
among others, the Brain Injury Social Work Group. BISWG is a small,
but determined, self-selected group of social work practitioners,
who have come together, since the start of the 1990s, to try to
overcome their frustrations with unresponsive services and
management structures.

However, BISWG has now affiliated with the British Association of
Social Workers as a special interest group, is organising a range
of educational conferences and events around the country, and is
liaising with the training sections of local authority social
services departments.

The future for people with brain injuries and their families, and
for the social workers who work with them, is beginning to look a
lot brighter. But much remains to be done.

Making headway: Recommendations for improving ABI services

• Data collection and a national ABI register:
  National and local information about people who suffer ABI is
  essential for rational service planning. Ideally, the Department of
  Health should co-ordinate this process and it should feed into the
  recommendations of the NSF for long-term care. 
• Care pathways and protocols: Models of care
  need to be mapped out, starting at A&E departments, through the
  rehab process, and continuing back into community reintegration.
  This will clarify who is responsible for doing what, when and
  how. 
• Equitable service provision: Service provision
  for people with ABI is totally fragmented and subject to the usual
  postcode lottery. Minimum standards of treatment, care and
  expectation need to be established nationally. The NSF should
  assist in this regard. 
• Continuing care criteria: Rehabilitation is
  often funded at specialist units outside the NHS by NHS Continuing
  Care money. The criteria need to be fair and equitable wherever the
  ABI person lives. There also need to be agreements between health
  and social services so that it is clear which elements of care are
  to be funded by which service. 
• Commissioning of services: Both health and
  social services must clarify at local level how their respective
  commissioners will engage in the commissioning and development of
  ABI services. This needs to be nationally monitored by the
  Department of Health. Again, NSF recommendations are likely to
  assist this process. With regard to social services in particular,
  the development of community rehabilitation services (in
  conjunction with PCTs) and specialist ABI community teams needs to
  be examined. The areas of the country where these services have
  been developed offer many useful models (and warnings).  
• Respite care: People with ABI and their
  families are likely to need regular breaks from each other, once
  the client is living back in the community. Rehabilitation is
  becoming more common, but there are still far too few specialist
  ABI respite care providers. 
• Training: Health and social services staff, at
  all points along the care pathway, need special training in ABI and
  its consequences. Many of the leaflets and books produced by
  Headway are useful in this regard, but far more are needed. Local
  authority training departments need to design courses for those
  social workers who will work with ABI cases. Contact with the Brain
  Injury Social Work Group is recommended.   

Case study 1: ‘He denied anything was
wrong’ 

Steve (not his real name), aged 28. Out for a drink with
friends, is beaten up by three men. He is found to have temporal
damage and a skull fracture. After a period of semi-consciousness
and sleep, Steve becomes active, claims he is being held prisoner
and must go home. He denies anything is wrong and becomes
aggressive. Ward staff ask for a mental health assessment, but this
then indicates he does not have a mental illness. Steve insists on
being discharged. His hospital consultant agrees because Steve is
difficult and his bed is needed. He is taken home by his mother and
partner. 

Steve is not referred to community rehab services (just for
strokes) or social or mental health services. His partner, who has
a young child, and his mother have to cope. Steve is impulsive,
aggressive, uninhibited sexually, spends money freely, collapses in
the pub after three pints. He is tired and spends days in bed, but
cannot sleep at night. 

After three months, the local social services vulnerable adult
team becomes involved. But Steve’s partner is very stressed, saying
this is not the man she lived with before, and is worried for their
daughter.   

Case study 2: ‘No rehab potential’ 

Derek (not his real name), aged 48. Experiences a metabolic
brain injury following a deliberate insulin overdose. He remains in
a coma for seven weeks, then starts to “wake up” but has no
apparent awareness of where or who he is. He has no speech but is
increasingly mobile, making him a major management problem for the
ward. The local NHS rehab unit turns him down on the basis that he
has “no rehab potential”. Consultant and ward unable to discharge
him back to elderly parents who visit but have no real insight into
what has happened to their son. Derek ends up “bed blocking”. 
Hospital social services and the local primary care trust become
involved, and Derek is referred to a specialist assessment and
rehabilitation unit for severely neurologically damaged people. The
unit is 90 miles away, and will take him, but will charge
£3,150 a week. The PCT baulks at the cost, negotiates, looks
at alternatives, is unable to find anything else, and three months
later agrees to fund his place. Derek waits eight weeks until the
unit has a bed for him.   

Mike Hope was formerly ABI co-ordinator for East Sussex
Brighton and Hove and this report was prepared for this authority.
He is now advising on brain injury for the Raphael Medical Centre.
Contact him at
RaphaelMC@freeuk.com
or on 01732 833924

References  

1 House of Commons Health Select Committee Third Report,
Head Injury: Rehabilitation, HMSO, 2001 

2 M Hope, Report and Recommendations for Development
and Commissioning of Services for Acquired Brain Injury,
Sussex Acquired Brain Injury Forum, 2002,
www.sabif.info/mhopereport.htm 

3 Social Services Inspectorate, A Hidden Disability:
Report of the SSI Traumatic Brain Injury Rehabilitation
Project, SSI/DoH, 1995  l Websites  Brain Injury Social Work
Group
www.biswg.co.uk,
or
www.basw.co.uk